Friday, November 07, 2008

JASPER Miles is one of only four children in WA with a rare life-threatening disease, but his mum Brooke has hope a cure will be found so he can outlive her.

Diagnosed with fanconi anaemia in February last year, the five-year-old has blood tests every three months and bone marrow tests every year to make sure his condition has not worsened.

Jasper has a high risk of developing head and neck cancer, leukaemia and bone marrow failure and has a life expectancy of 29.

Brooke said she and husband Paul had to be positive about the future and “not be reactive but proactive”. Having an early diagnosis helped.

She said the doctors could not explain Jasper’s abnormalities such as his small size when he was born and after years of blood tests and referrals from pediatricians to geneticists since he was six months old, the rare diagnosis was made.

“We are actively looking for a bone marrow match and are on the national registry,” she said.

“We feel it gives us more control.

“He is healthy at the moment and we don’t really need to worry about things too much.

“If you’re not positive then what else have you got?”

Brooke said Jasper, who only had a 25 per cent chance of being born with fanconi anaemia, had some idea he had the disease.

“We told him he has special bugs and got half from mummy and half from daddy,” she said.

“He says ‘I don’t want my bugs’ and ‘why do I have to have them?’.

“He asks a lot of questions and we try keep answers as simple as possible.”

Brooke, Paul and Jasper have met other families dealing with fanconi anaemia and Brooke said they offered each other much- needed support.

She said in the past year alone, with medical research and advancements, the life expectancy had increased from 21 to 29.

“Medicine moves foward and you have to have hope,” she said.

Brooke is fundraising to raise money for further research into the disease. She sells key chains and other items and said she wanted to increase public awareness about the disease.

“There is something special about the FA kids and we have to do what we can to find a cure, because if we don’t no one else will,” she said.

“As much as it is awful and wouldn’t wish it on anyone else, we wouldn’t change him for anything. You can take it with doom and gloom and look at it the negative way, but that’s not going to get you anywhere.”

To donate, visit www.fanconi. org.au. And check out Jasper’s website at www.jaspermiles.blogspot. com.